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When I asked the question to the VA they told me they did not track the number of PLS patients. Since everything is computerized in the VA it seems like it would not be very difficult for them to get an answer to this question.
 
The reason the VA recognized ALS as a service-connected disability was because this study (“Prospective Study of Military Service and Mortality from ALS” Weisskopf, Ph.D.; et. al) found that veterans over the past century have ALS at almost double the rate as the rest of the population. This clearly points to a service connection. It may be related to vaccinations though at this point they don't know. I agree with you that it ought to include all motor neuron disease.
I emailed the authors of this study and they informed me that they included people with PLS in their research. So people with PLS were included to make the case for service connection but are being excluded from the benefits. Doesn't make much sense!
The list of links I posted a while back indicates that there is a wide body of medical opinion that says that PLS is a form of ALS. These are respected medical organizations such as Johns Hopkins, Merk medical manual...etc not some fly-by-night outfits. I think we need to send this information to our doctors and our congressional representatives. There are not very many of us but if we can get our friends and families to make enough noise I'm sure we can get this changed. Politically both parties are eager to do things for veterans and because we are few in number it is not going to cost them a fortune.
 
Re: The GENEVA Study

TxRR
"Genes and Environmental Exposures in Veterans with Amyotrophic Lateral Sclerosis: The GENEVA Study" is a pdf file where I got the information about how the study classified veterans.
Here is the link. Just hope it works.
http://content.karger.com/ProdukteD...r=126911&ProduktNr=224263&filename=126911.pdf
If not try typing into Google: Genes and Environmental Exposures in Veterans

Such a very amazing link!
Thanks for the post.




__________________
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This question is for bpayton, maryhahnward and sadiemae.

When you initially filed your claims through the VA was it under the title of ALS?

The reason I'm asking is because my neuro just gave me a letter stating I have Upper Motor Neuron Disease a variant of ALS. I'm wondering if I should submit this with my current PLS claim or open a completely new claim for ALS so it can be expidited?

By the way, the VA recently denied my PLS claim for the second time. They said I haven't provided enough evidence to show service connection.
 
Someone at the V.A. needs to look at both ALS and PLS as motor neuron diseases. If you are going to automatically assume service connection for one motor neuron disease, why not another? This is my argument.
 
I forgot to mention that I do have a TVC rep. I justed wanted your opinions.
 
My husband's claim was submitted as "upper extremity weakness ALS" but it doesn't say a variant. I just looked through the award letter. He did not have to prove service connection because it is presumptive. In his medical records his neurologist at Duke, who is also his VA neuro, states brachial amyotrophic dysplegia upper extremity weakness. He had a PVA do all of his paperwork.

I hope the claim goes through for you and quickly.
 
My husband filed under ALS and did not have to prove a service connection. He had a diagnosis from two outside neurologists. A VA attending neuro was working in one of the offices at the time of diagnosis, so there was no question as to the diagnosis for the VA. Have you gone to one of the ALS clinics? Possibly they could go ahead and give you the diagnosis.
 
Alot of good input guys. Thank you all, I really appreciate it. I have not been to an ALS clinic but thats a good idea. Thank you.

I am waiting on one more letter from a neuro thats an expert in the field of ALS before I go to my VA representative's office. He diagnosed me with upper motor neuron disease back in 2007.
 
Did you contact Bpayton's service officer? It seems like he was rated service -connected with a diagnosis of PLS.
 
I tried numerous times and left several voice messages but he never returned my phone calls.
 
Maybe we all need to go to Johns Hopkins & get a diagnosis of ALS from their neurology department!
 
The VA took a letter from our Neuro. When we filed, we went into the regional office, and a guy(not a PVA rep) filled the form out on his computer and submitted it for us.
 
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